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Ryelle-Marie
Born: 10.26.2021
Ryelle-Marie "Nugget" was born 28 minutes after midnight on 10.26.2021 at a local Metropolitan area hospital. Soon after she was transported to Children’s Hospital in Washington, D.C. where she spent the first 4 months (111 days) of her life. She was released on February 14th, 2022, to her Grandmother, Marie Monroe.
Ryelle was born 32 weeks premature and from birth she has experienced many different obstacles from the result of trauma she received in the womb. She was born with cocaine, heroin and marijuana in her system, exposure to many communicable diseases, and at risk for related infections. She received a blood transfusion to combat the heroin, cocaine and marijuana in her system. She also received the Hepatitis B vaccine at birth because she was at risk of contracting it from her Mother.
Ryelle had jaundice due to delayed conjugation associated with pre-term delivery. Her liver wasn’t mature enough to get rid of bilirubin in the bloodstream. She had to undergo a few days of treatment as the bilirubin levels in her blood were high, which indicated liver disease. During that time, she would just lay in her incubator under the blue light, so calm and peaceful as if she was on a tropical island laying out in the sun and enjoying it.
If that wasn't enough, she had a small lower jaw with a receding chin (jaw underdevelopment). This makes the tongue larger than the jaw, resulting in airway obstruction. For every surgery she underwent, an Ear, Nose and Throat (E.N.T.) doctor had to be present due to airway blockage. This also caused Sleep Apnea as the muscles that support the soft tissues in her throat, tongue and palate, would temporarily relax, close her airway, and her breathing would cut off. She also had Retrognathia which is an unusual position of the mandible. Both conditions could restrict growth.
Overall she’ has received 43 procedures/surgeries from birth, with her last procedure in November 2022. She currently wears braces for her feet as she has bilateral pronation of both feet, the brace adds stability to the ankle and improves the foot muscle tone. It aligns the heel in the neutral position which helps develop the arch of the foot as her feet have no arch. Her feet also spread outward, beyond the sleuth's foot. Her feet face east and west when she stands. Once she starts walking and using her muscles, this may improve. If not, she will need mobility aids of some sort.
Her active current health issues from the prematurity and drug exposure that require constant follow-up examinations are:
- Hearing loss
- Middle Ear infections
- RSV infections
- Cleft palate – although repaired, there’s a possibility that the palate can open again.
- Immunizations are especially critical for her to receive.
- Oral hardware removal – there’s a possibility that the jaw can stop growing and she will need the procedure repeated
- Pierre Robin sequence in conjunction with the hardware. This is a rare congenital birth defect characterized by an underdeveloped jaw, backward displacement of the tongue and upper airway obstruction.
- Retrognathia
- Exposure to communicable disease – more than average. A cold for Nugget will have more serious effects on her body. The RSV, respiratory virus, causes her to wheeze, cough and have shortness of breath. She’s had that twice one required hospitalization and now she is treated using a nebulizer with albuterol when she receives cold-like symptoms to prevent asthma. If she gets RSV one more time, she will be diagnosed with acute asthma.
Nugget is a strong-willed baby and determined to do what she feels anytime, anywhere. She loves music, watching specific movies, Facetime with Gi-Gi, attending church, basketball games, and story time. I think she loves her Granny, and she loves her Gi-Gi.
ALL ABOUT MARIE MONROE "GRANNY"
Nugget's grandmother is 50 years old. She was 49 when Nugget came home with her and her life has certainly changed.
"No more doing things my way as I now have to do things Nugget’s way. Nugget needs fed, bathed, hugged, rocked to sleep, driven to childcare, shopped for, taken to many, many doctors visits and supported through surgery. I am proud to do so, proud that God gives me the strength."
"From day 1 – preparing for her to come home, I was active and diligent to make sure I had the basic essentials to provide care. My house was not baby proof and I never thought before that I would be taking care of a baby. I enjoyed myself and my time. Sleeping in on the weekends, going for a drive just to relax, skipping the baby aisles in a store, smoking cigars, wearing 6-inch heels, driving a sports car how I want to, and overall, just not caring for anyone but myself. I remember thinking...Now I needed to get a crib for my guest room as now I have a little person that’s coming home to stay for a while. I didn’t know for how long, but I knew in the beginning that it could potentially be forever and I welcomed it. I needed pampers, wipes, carseat, bottles, wash clothes, towels, soap, lotion, ointments, booger pickers, socks, onesies and an abundant amount of other things needed for a baby. I was pulling my hair out as I hadn’t done this in quite a long time, but I did it. I had friends and family from all over the country and internationally that poured in with help wherever I needed it. This was a MAJOR blessing to me."